Hypoparathyroidism leaflet web

Your GP or Endocrinologist may also check:
What do I need to know about my medication?Hypoparathyroidism
• The aim of treatment is to abolish symptoms – not to restore ‘normal’ calcium levels in the
When hypoparathyroidism occurs as a complication
• In the absence of PTH, higher levels of calcium
of surgery, the symptoms may start within hours to
are found in the urine for a given blood calcium
You have been diagnosed with hypoparathyroidism.
level. This can cause kidney stones or calcium
Here is some information to help you manage your
a few days after surgery. Diagnosis of a rare
deposits in the kidneys (nephrocalcinosis), even
genetic condition may take a little while.
when blood calcium levels are in the ‘normal’
How is hypoparathyroidism treated?
In the UK, you are likely to be prescribed:
• The target range is between 2.0-2.25mmol/L of
What is hypoparathyroidism?
adjusted calcium levels. The target range is
Hypoparathyroidism (HPTH) is a rare disorder in
• Calcium: Mild disease can be treated with
approximate and depends on patient symptoms.
which insufficient levels of parathyroid hormone
calcium supplements alone. Each tablet of
• This is achieved with an appropriate dose of
Calcichew®, Cacit® and Calcium-500® contains
alfacalcidol or calcitriol so that most of your
Parathyroid glands are four small glands which
500mg; Adcal® contains 600mg; Sandocal-400®
calcium can come from your diet and you will
lie behind the butterfly-shaped thyroid gland in
not need to take too many calcium supplements.
your neck. These glands produce parathyroid
1000mg of elemental calcium respectively. High
The doses are typically split over the day.
hormone (PTH), which closely regulates calcium
doses (>2000mg per day) should generally be
• Calcium should be taken at meal times.
levels. Calcium is important for functioning of
• It can take several months to get the balance
nerve, muscle, bone and other cell functions.
• Vitamin D: Most patients will not achieve
adequate control with calcium alone. Active
forms of vitamin D such as calcitriol or
• Over time, your medication requirements can
What causes hypoparathyroidism?alfacalcidol are favoured over high dose
also change. This is often revealed by an increase
The commonest cause is destruction of the
colecalciferol or ergocalciferol. They are easier
or decrease in your calcium levels which you may
parathyroid glands during neck surgery. The glands
to adjust in response to calcium levels.
may also be damaged by the immune system. Some
Maintenance dose of calcitriol or alfacalcidol is
• You and your doctor need to learn to recognise
people are born with the condition (congenital).
typically between 0.5 – 2.0 micrograms daily.
Sometimes, the cause is unknown (idiopathic).
Doses up to 3.0 micrograms are often required.
medication may be adjusted accordingly.
Calcitriol (Rocaltrol®) capsules come in 0.25
• Symptoms can still be felt when the test results
How is the condition diagnosed?
are in the normal range (2.20 – 2.60 mmol/L)
The initial diagnosis is often done by your GP who
microgram (white capsules). Alfacalcidol
which is a wide range. If your levels are
will assess symptoms and take a simple blood test
(nonproprietary) capsules come in 0.25, 0.5 and
unstable, keep a diary of test results, doses and
to measure calcium. If this is low, you will be
symptoms to help you recognise your symptoms
• Magnesium may need to be corrected in
postsurgical HPTH if levels are found to be low.
Diagnosis is by means of blood tests showing:
• Levothyroxine (thyroid hormone replacement) is
What should I do in a crisis?
• Low parathyroid hormone (PTH) levels and
needed if you had your thyroid gland removed.
• A ‘crisis’ can arise out of very low or very high
• Low calcium (called adjusted or corrected serum
medication if possible (ideally 4h, at least 2h).
• Seek help. You can contact your Endocrine
Specialist Nurse, Endocrinologist or your GP.
Usually, daily treatment is essential and lifelong.
• Your calcium may need to be increased or cut
However, post-surgical HPTH may resolve. The level
of calcium in your blood will need to be checked to
• You must never adjust your alfacalcidol or Low calcium (hypocalcaemia)
• If symptoms persist or get worse, seek help and
Living with hypoparathyroidismEarly symptoms include varying degrees of ‘inner
Many people with HPTH can expect to lead normal
shaking’, dizziness, ‘brain fog’, blurred vision,
• Stopping the tablets altogether can lead to big
irritability, sensitivity to sounds, diarrhoea,
swings in calcium levels. Do not do this on your
• With permanent but mild HPTH, temporary
anxiety, extreme weakness, chills, headache.
symptoms may occur from time to time.
‘Tetany’ is involuntary contraction of muscles
• Severe HPTH is rare but you may experience
Taking Tablets
constantly unstable calcium levels (or brittle
• Symptoms can arise through, or be made worse
Always carry spare medication with you.
HPTH ) and a range of symptoms which can be
by, anxiety and over-breathing. It is important
• Try to maintain a month’s supply in reserve.
very challenging. You should be referred to a
• Carry an extra supply of medication on holiday.
• Most mild symptoms usually pass.
• Carry your medication in your hand luggage
• You may experience episodes of unusual fatigue
• If they don’t, try drinking some milk or calcium
when travelling by plane, with prescription
or muscle weakness. At times you will need to
fortified orange juice or eating some food.
allow your body to catch up, with extra rest.
• If after an hour symptoms still do not improve,
take an extra calcium tablet. Stay calm and keep
Does anything affect my calcium level?
pregnancy and a normal childbirth. Calcium,
warm. Calcium tablets take about 20 minutes to
• Diet: It is better to get your calcium from your
vitamin D and thyroid hormone doses may need
food than from supplements. However, some
• Sometimes you may just need to take some of
foods, e.g. too much wholemeal bread, spinach
• You may need extra medication during
your day’s dose a little earlier than usual
or tomatoes, alcohol and fizzy drinks can
strenuous physical exercise. Rarely, with severe
deplete calcium. Dehydration also affects
HPTH, exercise may be difficult with bone pain
• If this keeps happening you should get a blood
calcium levels: drink eight glasses of water daily.
and muscle weakness. Try to be gently active.
test as it might mean your medication needs
• Calcium levels can be affected by: illness,
infection, fever, sweating, vomiting, diarrhoea,
• If you feel severely unwell or there is a sudden
dehydration, surgery (including dental), stress,
Further information and support are available from
onset of severe symptoms, don’t wait, take extra
Hypoparathyroidism UK, a national voluntary
medication and call your doctor. You need to
organisation, working to support people with
(oestrogen affects calcium), exercise, and
take sufficient extra medication to prevent a
hypoparathyroidism and other rare parathyroid
various medications (e.g. iron, aspirin, diuretics,
crisis. An emergency injection of calcium may be
conditions and to promote better medical
bisphosphonates, beta-blockers, PPI’s).
understanding. Hypoparathyroidism UK offers a
needed if your calcium levels have dropped very
website, a telephone helpline, and free membership
What kind of medical support will I need?
that includes an online forum and newsletters.
• Endocrinologist: Initial visits at the outpatient
High calcium (hypercalcaemia)
department may be frequent (about 3 monthly),
Warning signs include thirst, frequent urination,
then 6-12 monthly visits afterwards.
severe headache and nausea, stomach ache,
GP: Your GP will continue to provide advice
depressed mood, constipation, extreme fatigue,
in-between visits. Your GP will issue repeat
heavy, painful limbs, confusion. None of the
prescriptions. You are entitled to receive your
medication free of prescription charges. Your GP
conditions other than raised calcium.
Mild symptoms may be averted by drinking water.
MedicAlert: We recommend that you wear a
This leaflet has been prepared by the HPTH UK Clinical
MedicAlert bracelet. Hypoparathyroidism UK
Advisory Team and HPTH UK in conjunction with TheSociety for Endocrinology. HPTH UK Clinical Advisory
members are entitled to a 5% discount.Team is a group of Endocrinologists with an interest inthe parathyroid glands and calcium metabolism whoadvise HPTH UK on medical matters.